Our Fifty-fifth Anniversary

Kate and I married 55 years ago today. Like every young couple, we began with somewhat vague hopes and dreams. All we really knew was that we were in love. We could never have imagined all that lay ahead. The good news is our dreams have come true. I don’t mean in any specific way. What I mean is that our love is deeper now than every before and that are lives have not only been enriched by our experiences but by sharing them together.

Life is much different now. Kate hasn’t been able to remember birthdays or anniversaries for several years. I have talked about this anniversary several weeks. She has never been able to remember it. That sounds sad, and it is; however, neither of us is feeling sad this morning. Kate is living in the moment. As usual, she is happy with this moment. We’re on our way to Asheville where we have celebrated quite a few anniversaries. We’ll stay at the same hotel where we have stayed for the past 15 years or so. We’ll eat at the same restaurants. We’ll enjoy our time together. Kate won’t remember it, but I will. She has little or no memory, but she is still able to enjoy living through her senses. I am thankful for that. Most of all, however, even though she is forgetting my name, she still expresses her love for me as I do for her. Who would have thought that this far into Alzheimer’s life could be so rewarding. We are fortunate people.

How long can she remember? Not long.

Somewhere I read that a person in the later stages of dementia can only remember something for 3 seconds. Based on my experience with Kate, that sounds about right. For example, at Panera this morning, she asked me to tell her my “real” name. I asked if she meant my first name. That was the one she wanted. After I told her, she wanted the middle and last names. I gave them to her and then repeated the first, middle, and last names. Then she said the three names. She started to repeat them again but could only get my first name. She tried again. She could get it, but it was difficult to get it right after saying it once. I’m just glad that she doesn’t appear to be overly concerned about it. I emphasize “overly” because she obviously is concerned or she wouldn’t keep asking my name, our childrens’ names, or the name of the city in which we live. She sometimes apologizes for asking again. I always tell her, “That’s why I’m here. You can ask me as many times as you want.”

Good Times with Bitter Sweet Moments

Once again, I am happy to report that the balance of our day yesterday was as good as the start. After returning from lunch, Kate rested for a little over an hour. Then we went to a movie. This was a bit unusual in that it was a movie we had seen just last week, RBG. Kate hadn’t remembered it, but she had enjoyed it. Since we didn’t have any special Memorial Day plans, I decided to take her again. We liked it just as much the second time, and I appreciated the artistry with which the story was told even more than before.

As we were getting out of the car before the movie, she again asked my name, and I told her. She is so very natural when she asks me. She shows no sign of being bothered by having to ask nor does she seem to be concerned about hurting me. Other than the question itself, she doesn’t sound like we imagine a person with Alzheimer’s would sound just childlike.

While we were at lunch, I received two DVDs from Amazon. One was Fiddler on the Roof. The other was Les Miserables.  Last night we watched a portion of Fiddler. Although she was working puzzles on her iPad throughout the movie, she was following it and enjoying the music. I did as well. This is rather unusual since she hasn’t expressed much interest in TV programs or movies in a long time. It was a nice way to end the day.

Kate was already in bed as I pulled back the covers on my side to get in bed when she said, “Do I have a name?” I told her she did and went over to her side of the bed, sat down and told her. I said that she had a special name because it was a family name. That prompted her to say how much she loved all her aunts and uncles. She was in one of her talkative moods again. She started to talk about our relationship. She has a set of things she recites. She is glad we met and how fortunate that we have been. Last night she also talked about how comfortable she is when she is with me and how easy it is for her to say things to me.

I continue to interpret her behavior in light of what I have read in The Dementia Handbook. The loss of her memory is dramatically expressed in her failure to recall names and facts, but her senses are alive. Every few minutes as we watched Fiddler, she would say something about what a good movie it is and how much she liked the music. More importantly to me, she still has special feelings about our relationship and me. And, as she has said, “I can’t even remember your name.”

Memorial Day 2018

We’re off to a good start today. I woke up at 5:15 and thought about getting up since that isn’t too far off from 5:30 which I consider a good time for me. I checked the weather and discovered that it was raining, so I got back into bed. I woke again around 6:00. This time I just decided to stay there. The next thing I knew it was 7:00, so I finally got up.

Kate got to sleep easily last night after having slept late yesterday morning and taking a long nap in the afternoon. She was up at a typical time for her around 9:30. We are now at Panera where the crowd is slim this morning. I think a lot of people are out of town or were in earlier Kate is in a good mood, and we’re ready for a nice day.

As we started to get out of the car, she said, “What is your real name?” I said, “You mean my last name?” She said, “The one your parents gave you.” I told her, and she said, “I’ll bet that was your father’s name too.” It was.

I find myself analyzing Kate’s behavior in light of the book I finished reading yesterday, The Dementia Handbook. In this case, I could look on this incident with sadness. It is truly sad that she is forgetting my name. On the other hand, I have somehow been able to take pleasure in the things that she can do. I believe this one of the things that Cornish was trying to communicate in her book. There are many losses of “rational thought” for people with dementia, so we as caregivers need to focus on the many aspects of intuitive thought that our loved one’s still possess.

Interestingly (to me anyway), in the middle of the paragraph above Kate looked at me. I must have had a very serious, intent look on my face. She started to mimic my expression, and I laughed. She chuckled as well. Then I said, “You know, I think we were meant for each other.” She said, “If I could only remember your name.” Then I said, “Could I be serious a minute.” She nodded. I said, “Do you really remember my name right now.” She said, “If you tell me.” I did, and she said, “That’s what I thought.” It’s clear that she really is forgetting my name. It’s equally clear that she remembers me. I am glad that she can be so open about forgetting and that she can add a touch of humor to it. As I’ve said many times, my mood is heavily influenced by how she is getting along. When she’s happy, I’m happy. I’m looking forward to the day.

That takes me back Cornish’s thoughts about the retention of intuitive thought by people with dementia. Kate’s ability to correctly interpret and tease me about my serious facial expression indicates that her intuitive ability to read and respond to emotions is alive and well.

Odds and Ends at the End of the Day

It’s been another good day for us. We didn’t do anything special. In fact, given that Kate slept until almost 11:00 and took a nap from 2:00 to 4:00 this afternoon, we’ve spent less time together than usual. We went to Barnes & Noble when she got up and from there went to dinner and back home for the evening.

At dinner, Kate looked across the table at me and said, “Tell me your name.” I said, “Would you like my full name or my first name?” She said, “The name your parents gave you.” I told her “Richard.” Then she asked my middle name. When I gave her that, she filled in the last name. She then asked me to repeat it twice more.

Leaving the restaurant we had to step down from the curb to our car. I gave her my hand which she accepted. She said, “Thank you for not thinking I am crazy.” I’m not sure what motivated it, but it appeared that she thought it silly that she was taking my hand for what seemed a simple task.

When we got home, we went to the family room where she worked on her iPad. She always likes to have the ceiling fan on but hadn’t turned it on. I was in the other room when she called to me. I went to the family room where she pointed to the ceiling fan. This was one of those times she was asking me something with her hand signals. I chuckled and turned it on. She laughed and said, “You must think I’m silly.”

As she was getting ready for bed, she called to me with a whisper from across the room. When I went to see walked over to see what she wanted, she whispered even more softly, “Are we spending the night and tomorrow night here?” Moments later as she was undressing, she asked the same question again.

She turned out the light and got into bed before 9:30. I was surprised because of all the sleep she got last night and this afternoon. I wonder if this will affect what time she gets up tomorrow.

A Peaceful Sunday

It was a very peaceful morning in our home. Kate slept until almost 11:00. I also slept a little later, 6:25, after initially waking at 5:15. I had breakfast and got in a walk of almost three miles. I checked email and did some reading in a book I discovered recently, The Dementia Handbook: How to Provide Dementia Care at Home by Judy Cornish. Her approach to caregiving for people with dementia has captured my attention. (I’ll say more about that below.) As always, I’ve had music going constantly. This morning it was a collection of classical sacred music. This is the closest I come to meditating.

The Dementia Handbook led me to think about how Kate and I have approached her Alzheimer’s. At the time of her diagnosis, we were determined to make the most of our time together although we didn’t know how much time that would be. The doctor gave us the impression that it might be as long as twelve years but, possibly, less. I am sure neither of us imagined that she would be getting along as well as she is almost 7 ½ years later. It is really remarkable how well she does, especially since her memory is so very poor.

I read a lot of different things about dementia. One of those is that people with dementia retain abilities related to emotions far longer than they remember names and facts. I was shocked when I first discovered that my mother did not know me. For a long time, she had greeted me as she had all her life. I assumed, incorrectly, that she knew I was her son. In a sense, she did know me. That is, she recognized me, but she no longer knew my name or that I was her son. I have noted in several of my posts that Kate is beginning to forget the names of our children, but she still knows them when she sees them. At this point, it is only the names that are slipping. The same is true for me. Sometimes she forgets my name, but she still knows I am her husband.

What I am learning from The Dementia Handbook makes a lot of sense in terms of my own observation of Kate. In most ways, she usually appears perfectly normal to anyone we meet in short-term interactions like those that occur at Panera, Barnes & Noble, or any of the restaurants we frequent.

She retains the ability to greet people, to express interest in them, or to offer encouragement. For example, at lunch today our server was telling us about her week. Her car died.  She has no transportation. She is a single mother who works full-time as a server while going to school. I told her I couldn’t imagine how she was able to deal with all that. She said she sometimes just goes into the bathroom, breaks down, and cries. Kate immediately spoke words of encouragement and suggested that it was good to “get it all out,” and she did so with a tone of voice that communicated her sincerity.

On numerous occasions, she has approached house cleaning staff in hotels or similar personnel in restaurants and expressed appreciation for keeping the place so clean. A year ago this past Christmas, her cousin, Sharon, took us to lunch at her country club. As we left, Kate thanked a member of the clean up crew. Sharon was amazed at Kate’s sensitivity. I am also mindful of the fact that at the time of her diagnosis, we were told that she would retain her greatest strengths the longest. Her social skills and a caring heart are among those.

I will never know all the things that have made Kate’s experience with Alzheimer’s so much better than that of many others. I do believe, however, Cornish has it right when she suggests that the best way to care for a person with dementia is to recognize that she is unable to do many of the things that depend on memory but that other abilities remain in tact for quite a while. The best treatment is to minimize the situations demanding memory and maximize those that capitalize on the person’s experiential skills. I believe that is what we have done. Rather than remaining at home most of the time which is the easy thing to do, we are out and about a good portion of the day including the dinner hour. I started eating out for all our meals as a way that Kate and I could focus on each other more than we might have done if I prepared meals at home and then cleaned up the dishes afterward. I didn’t realize how critical this would be to both of us from a social standpoint. I plan to keep it up as long as it is feasible.

Thinking About Long Term Care

Yesterday, one of the people I follow on Twitter posted something that caught my attention. She made the point that the decision about the best place to spend one’s senior years is a matter of personal choice. I share her opinion. What is best involves one’s personal preferences as well as the situation in which one finds herself. The research shows that seniors overwhelmingly prefer to remain in their own homes, but circumstances can make that impossible. As with so many things, “One size does not fit all.”

Kate and I have experienced that with our own parents. After her father’s stroke, Kate’s mother wanted to bring him back home. She discovered a man who had retired and had started providing in-home care. Although he was married, he moved into their home and provided 24/7 care. He was able to get away to run errands and visit with his wife who sometimes came to Kate’s parents’ home to see her husband. It was a unique situation that worked well.

A few years later, Kate’s mother had a stroke. In that case, she had a close church friend who served as a personal assistant for her mother. She knew about a woman that was retired and looking for a place to live. Kate, her brother,  and the assistant arranged for the woman to move into her mother’s house and serve as a manager of several caregivers who provided 24/7 care. That worked well until the manager developed her own health issues. At that point, Kate, her brother, and I decided to bring her mother to Knoxville.

Kate contacted a friend whose husband had recently passed away and asked her about the help she had used. Kate called the agency and arranged for five or six caregivers who provided 24/7 care for her mother in our home for almost 5 ½ years. Periodically, Kate and I were able to get away. When we did, her brother Ken came to Knoxville and stayed until we returned. That turned out to be a terrific arrangement for her mother and for us. Until the very end, she came to the table three meals each day. Although she was mostly non-communicative for most of that time, she was able to live in a normal home environment. We were glad to have her.

My mother had dementia. My father cared for her at home the entire time. My brother and I tried our best to get help for him. At one point, he accepted, but that didn’t last long. It really bothered him that much of the time the caregiver was sitting around watching TV or reading. He did use a day care center where he left my mother every Wednesday for four hours while he attended his Kiwanis meeting and did his grocery shopping. He was still driving, so he and my mother were not restricted to the house. Even in the latest stages of her illness, he took her with him whenever he went out. He was 89 when she died. She was wheelchair bound for the last one or two years. I was amazed that he would and could take her out so much. Her care took its toll on him, but it was what he wanted. He bounced back after her death and lived to celebrate his 100th birthday.

Seven years after my mother died, Dad had a stroke that affected his mobility and, for a while, his swallowing. He spent the balance of his life, almost three and a half years, in a skilled nursing facility. Although there were many things we didn’t like about that option for him, it seemed like the right thing. Even now I believe it was the best option. The major downside was that he was more mentally alert than 95% of the other residents. I tried to compensate for that by visiting him every day. In addition, he was a very outgoing person and had attracted a lot of younger friends who visited him periodically. He had been very active on email. That led me to create a distribution list of more than fifty friends and family with whom he had been communicating a long time. I wrote frequent emails using his email address and his name. Under his name I wrote, “And Scribe.” This brought him lots of responses that I read to him when I visited each day.

Given this experience, you might ask what Kate and I have planned for our future. The short answer is that we are like most seniors in that our preference is to remain at home if that is possible. We have long term health insurance that will take care of a substantial portion of the expenses associated with in-home care. Note that I said, “if that is possible.” I don’t know what lies ahead. We are familiar with the options available to us in the Knoxville area. There are at least two or three continuing care communities that I would consider if that seemed appropriate. There are also assisted living facilities, but I doubt that I would consider them, especially knowing that Kate is likely to need more personal care than they typically provide.

Kate and I were glad to have played a significant role in the care for all four of our parents, but we both agreed long ago that we would do what we can to minimize our children’s responsibilities. That could even involve a move from Knoxville to Texas or Virginia to make things easier for them. At the moment, I don’t see a move on the horizon, but I am not closing any of the possible options. As our situation changes, the most desirable options will likely change as well.

When I read the tweet that prompted this essay, I responded with my own tweet that said, “The matter of where to live for seniors is a big issue. Wouldn’t it be nice if seniors and their children worked together to make the appropriate choice?” I believe that’s a good idea. That is especially true in our case since our son is in the elder care business.

I’ve tried to keep both children abreast of our situation. This journal alone should do that. I have also made sure they are fully informed of our financial situation, something that most parents don’t think about in advance. In addition, several years ago, I put together a list of our doctors, attorney, accountant, insurance agent, banking information and medications. I am in the process of revising that information right now. We also have arranged the appropriate powers of attorney for them should I become incapacitated. I know our children are bound to discover some things that I have overlooked, but I believe our openness will make our children’s lives easier than they would have been if we hadn’t taken the proper steps to prepare for the future.

A Nice Finish to the Day

We didn’t do anything special, but it was a really good day. Were it not for the regular memory issues, I couldn’t have told you that Kate was any different than the way she had been before Alzheimer’s. She has seemed sharp as a tack. One of those memory issues was clear at lunch. She mentioned her mother. Then she asked me if I like her mother. I said, “Of course, your mother and I were buddies.” That is true we had gotten along well during the early days of our courtship. The she said, “I can’t even picture what she looked like.” I told her I would show her a picture when we got home. Ken will be glad to know that the photo album he recently gave her is coming in handy.

She surprised me last night and this morning. She turned on the TV, something she hasn’t done in months. I thought she had forgotten how. In the past, she has had trouble getting the channels she likes. I have been setting it on NBC each night knowing that she used to turn on the Today Show every morning.

In addition, she made up the bed beautifully this morning. She has been making it up recently but not nearly as well as she did today. Not only that, she has been picking up her clothes and hanging them in the closet.

I don’t know what has made the difference, but it is nice to see. We returned a little while ago from our Friday night pizza place. We are now finishing off the day in the family room where I am playing an Andre Previn album. All is well.

Off to a Good Start

Kate is in an unusually cheerful mood this morning. Since she got ready for the day, she hasn’t shown any of the slowness that she often feels in the morning. She has also teased me a little bit. In addition, she wasn’t the least bit annoyed that it took me a little bit longer to get my things together after she was ready.

On our way to Panera, she asked, “How many grandchildren do we have?” I told her and then asked if she would like me to tell her their names. She said yes, and I went through each of them as I normally do. I started to tell her about our son’s children. She asked where they live. I told her they live in Lubbock. When I mentioned that Brian, our oldest, had just finished his freshman year at TCU, she was as happy as if this were the first time I had told her. To her, it really was.

At Panera, she looked up from her iPad and said, “What is your last name?” This is becoming rather common now. I guess it is understandable since she rarely has any reason to use it whereas she does use my first name which she is also forgetting occasionally.

Today, we have a sitter coming at 1:00, so we’ll leave soon and get some lunch. It looks like another good day.

Postscript (3:15 p.m.)

Normally, I don’t tell Kate that I am about to leave and the sitter is coming. I just wait until the sitter arrives. Then I say something like, “Well, I guess it’s time for me to go to Rotary and/or the Y.” She seems to accept that without showing any great concern. Her recent comments about liking to go where I go have made me wonder if she is telling me that she would rather be with me than the sitter. On at last one occasion a few months ago, she said just that.

Anyway, my concern led me to tell her in advance that I would be going to the Y. She responded just as I hoped. She wasn’t bothered at all. She just said she would see me later. I was relieved. I consider that an additional sign of how good she has felt all day today.

Another First

A few minutes ago, I was standing beside the bed as Kate was getting into it. She said, “Are we married, or are we going to get married?” “I said, “We love each other. It seems we should be married.” She said, “Me too. Good night.”